Long term health conditions

Hassan - Interview 30

Male
Age at interview: 18
Age at diagnosis: 3

Brief outline: Hassan has Duchenne Muscular Dystrophy (DMD). Hassan was born in Pakistan but the family has relocated to the UK because he needs specialised medical care. With the help of his home tutor Hassan is writing a story about his experience of living with DMD. Hassan's message to other people living with a chronic condition is never to give up.

Background: Hassan lives with his parents and a younger brother. He has five hours of home tutoring. He would like to attend school but the authorities have failed to find him a place. Ethnic background/nationality' Asian Pakistani.

Audio & video

Hassan has Duchenne Muscular Dystrophy (DMD). Hassan was born in Pakistan and says that his mother and grandmother first noticed that something was wrong because as a child he used to fall down a lot. His mother took him to the doctors but they told her that there was nothing wrong with him. When he was around 3 years old his parents brought him to a hospital in London where he was diagnosed with DMD. Hassan's condition is deteriorating and he began to need many medical facilities that were not available in his home country. His father therefore decided to put his career on hold and bring his sons to England. Hassan's brother also has the same condition - DMD. 

Hassan says that he has grown up surrounded by the love and care of his parents, grandparents and extended family. Back in Pakistan he attended a mainstream school and other children were always supportive and attentive to his needs. In the U.K. Hassan has been unable to continue with his education as the local authority has failed to find a suitable school place for him. He would like very much to go to school and continue with his education. However he does have five hours of home tutoring each week. With the help of his tutor Hassan is writing a story about his experience of living with Duchenne Muscular Dystrophy. He wants to show that even when you can't walk you can still do many things like writing a book.

On 8th October 2005 Hassan was taken to hospital as an emergency, unable to breathe because of a lung infection. Doctors told his parents that there was nothing more they could do for him and that it was time for him to die. His father became angry with the doctors and insisted his son be transferred to another hospital. For a month Hassan was in a critical condition but he pulled through. He says that only God has the right to determine when you die, not doctors. 

Hassan has a fighting and positive attitude. He does not want to give up and is determined to go on. But he also says that it is difficult to live with his condition, and that sometimes he is sad and angry, and that he gets through because of his mother. 

Hassan's message to other young people who are living with a chronic condition is never to give up. He says that he has lots of problems but that he is still happy.

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